Welcome to the World of EDS: Tips & Tricks for the Newly Diagnosed

Hello and welcome My name is Jessica Adelman and I am the social media and communications manager for the Ehlers-Danlos Society and I will be your moderator today For our webinar today, we have Maggie Buckley presenting on “Welcome to the World of EDS and HSD: Tips and Tricks for the Newly Diagnosed.” This webinar is part of our ongoing series, “Living with EDS and HSD.” A quick note about how this webinar is going to work Attendees are muted at all times; however, you are able to type questions into the question box at any time Maggie will not be able to see or respond to any of your questions until the Q&A time at the end of her presentation Please do not send your questions more than once It will not increase the chances your question will be answered It will only make it harder for us to zip through those questions Maggie Buckley has been a Volunteer Patient Advocate for more than 25 years while living with chronic pain condition Ehlers-Danlos Syndrome She currently serves on the board of PainCommunity.org and as a patient liaison to the Board of Directors of the Academy of Integrative Pain Management Previously, she served as a board member of the American Pain Foundation and the Ehlers-Danlos National Foundation Additional volunteer experience has been with Northern California Pain Care Initiative, National Organization of Rare Disorders, Pain Care Forum, and National Fibromyalgia Association She has an undergraduate degree in Social Work and an MBA in accounting with experience in banking and business management She has testified at state and federal policy hearings, spoken at conferences and in the media, written articles and coached hundreds of people to self-advocate for better care On a personal note, Maggie Buckley was the first person that helped me figure out how to live with my EDS, so you are in wonderful hands here today Thank you, Maggie, so much for being here Thank you, Jessica That’s a pretty thorough introduction A lot of stuff I don’t need to cover Let me get this started here If I can figure it out Or not There we go These are some of the organizations for which I volunteer or have written things that appear- appeared in their publications or on their websites I have no financial disclosures to make I want to welcome you to the world of EDS This is an elite group of people that share benefits, talents, and skills So, first of all, this is the most attractive group of people that I’ve ever met in my life, and I have met thousands and thousands of people from all over the world, who have EDS Each one stands out as unique They’re so very smart in a traditional way, as well as in unexpected ways Not to mention that soft skin and youthful appearance It’s one of the benefits of EDS that a lot of people talk about These people are talented navigators of life Even before getting a diagnosis, these are the people who did things a little bit differently They had to find a different way to accomplish things, because something hurt or something didn’t quite feel right, and they still were compelled to move forward Many have a contingency plan, for their contingency plan, for their contingency plan, just to walk across a room So, that gives you an idea of what the innate coping skills are developed early and become very, very strong in somebody who knows intrinsically that there’s something different about them these people have excellent problem-solving skills So, if your hands hurt, for example, it’s difficult to open things It’s difficult to write or type So, this group of people, I’ve found, have very creative problem-solving skills to get things done, etc There- they are alert and aware and they catch the details that others are going to miss in a room, because they are always looking for obstacles They are looking for potential things that they might trip over Or, if their feet hurt, they’re looking for the next place they’re going to sit down to rest on their journey across the room, down the street, in a building, wherever They’re flexible, quirky They’re known for wearing their clothing inside-out A lot of them like really tight clothing, because it- it feels more comforting to them and I’ll get into that a little bit more later of another reason why that might be They often become ambidextrous out of necessity over time If one part of the body doesn’t work, then they start using the other part of the body and they develop motor skills So, that’s your first tip It’s: Challenge Yourself Learn to use both hands as much as you can to do everything That way, when you are faced with an injury that prevents you from using your dominant hand,

you have some skills, some motor skill already developed in that- that alternate hand We’re gonna do a quick- really quick overview of EDS The diagnosis of EDS subtypes comes by finding the one that most of your symptoms match There’s clinical criteria for guiding the diagnosis and your signs and symptoms are going to be matched up with the major and minor criteria, to identify the subtype that is the most complete fit There is substantial symptom overlap between the EDS subtypes and other connective tissue disorders, including hypermobility spectrum disorder From here on out, I’m going to refer to Ehlers-Danlos Syndrome as EDS, and hypermobility spectrum disorders as HSD If I happen to mention joint hypermobility later, I will probably say JH Now you know what I’m talking about So, a definitive diagnosis for all of EDS subtypes, except for hypermobile EDS and HSD, calls for confirmation to identify the responsible variant in the gene That is not available for HSD or for the hypermobile type For the other types, it is, which is why most people think of going to a geneticist or getting genetic testing as being the way to confirm their diagnosis or get a diagnosis The molecular testing results also provide the basis for genetic counseling for families, guidance on treatment options for ourselves, and helping to reach research goals We still don’t know what that gene is for the hypermobile type or for HSD and its research is ongoing, so we’re hopeful that in the next few years we’ll identify some of the genetic defects It’s most likely that it will be multiple We currently have 14 defined types That might be a surprising number for some people who’ve done research online and just read the 2017 Classification, which includes 13 types So, another one has been identified that was published and as- as we move forward, as they’re identified, that number will continue to change, and that has historically been the case So, it doesn’t mean that anybody knows less or knows more I was diagnosed back in 1974 and there were- or ’75 and at the time, there were 18 different types of EDS Some of those were spun off to be completely distinct disorders of their own Others became the named types There has been other revisions of the classifications, or nosology, as it’s called in research terms So, researching Learning as much as you can Okay? Start with the Ehlers-Danlos.com website Which is noted on the bottom of that slide Alright? So, Ehlers and Danlos are two people’s names So, a lot of people wonder, “Why do we have this complicated name and why is it so difficult to pronounce?” Well, basically, EDS symptoms have been noted for millenia noted for millennia so if you look at it in that context you can see that ehlers-danlos isn’t necessarily the worst name we could have a condition known by known by we could have been called Jen soon Ben we’re mere currents or turn ago bows as they they refer to it in Russia etc in 1936 Frederick Parks Webber suggested ehlers-danlos syndrome would be an appropriate name because of the 1901 in 1908 case studies presented by those two doctors who both happen to be dermatologists by the way so to make sure people know what you’re talking about and what you mean when you say Ahlers Danlos syndrome or ehlers-danlos always include the s for syndromes in there and it is syndromes and you’ll notice that it is sorry you’ll notice that it is not capitalized and that’s because ehlers-danlos syndrome is a is a group of conditions that share a core set of symptoms it’s the skin issues the joint issues and some of the vascular and oregon issues so all of the conditions that are in this group in this bucket share that corset because they share a core set of symptoms they’re known as a syndrome collectively or syndromes collectively so instead of writing just ad make sure you leave that

s on the end there the international standard is to refer to it as EDS and then whatever the names type is classical to notice per axis article Asia hypermobile etc we no longer use the numbers if somebody’s using a number to describe a leers analyst and we know that they are not up to date well we can infer that they’re not up to date the international standard is to refer to it as edy yes all related research papers must be published in English to be considered for inclusion in the international coalition of iller stemis syndromes and related disorders body of work as was published in 2017 yeah that coalition considers continues to do literature reviews updated articles etc on an ongoing basis so even since that time in 2017 there have been dozens of articles published when the acronym of IDI is used it’s presumed first of all that somebody’s referring to an effective dose or the emergency department some other things they might be talking about our eating disorder or erectile dysfunction the abbreviation in French Spanish and Italian is sed and that’s because the sin the word syndrome comes before the Ahlers fanless and it’s just something to be aware of it helps to know that when you’re doing a literature search and these you know technological times you can get an article in Italian for example and you have ways to translate it online if you’re curious about what they’re researching so why can’t I find a doctor well you do some math and you look at population for this example we’re looking at u.s. population figures from July of this year just last month and you can see that depending on what the the occurrence level of of EDS is it can really skew the number so if we’re looking at how many people in the United States actually have EDS it’s somewhere between 65 thousand and one hundred and thirty two thousand depending on if you’re looking at 1 in 5000 or 1 in 2,500 for the website and for the 2017 classification estimates on how often it’s found compare that to the nine hundred and seventy thousand physicians and surgeons and you realize that each of those physicians or surgeons has only seen seven to 15 EDS patients in their lifetime and that would only be if each of those people with EDS had a confirmed diagnosis that appeared in their their medical record that the physician or surgeon would know that they’ve seen that number of EDS patients so since not everybody has an ETS diagnosis for a variety of reasons some want it some don’t somebody have a faith some have a family member that has the diagnosis that they aren’t as severely affected they don’t feel they for a variety of reasons need to pursue a diagnosis they just are aware of the symptoms and issues so a doctor may not even know that they’ve seen that many patients even if they do know that they had seen seven to fifteen patients every doctor I’ve met he’s seen multiple EDS patients is amazed at the variation in symptoms from one patient to the next and these are some of these are providers that are specialists in their field that you know do neurosurgery or they’re geneticists that specialize in connective tissue disorders etc and without exception there they’re all amazed that as soon as they think they’ve figured it out nope it’s different so back to finding a doctor so the best doctor that you’re looking for is someone who says I don’t know anything about EDS let’s research together let’s try a few things experiment and they’re gonna be working with you so before working with a new provider you may want to contact them and ask them if they’ve even heard of EDS you can contact them by phone by email or even an old-fashioned letter letting them know what your concerns are or what your expectations are if they have not worked with an EDS patient before and they’re straightforward and tell you that that’s actually a good thing if they say yeah I’m willing to learn with you that’s even better for you so in many cases though you might

think oh this doctors a really nice person but you don’t have confidence in their professional abilities that’s okay you may have the utmost confidence in their professional abilities you kind of don’t like their demeanor or you just don’t click it’s kind of like dating until you find somebody that you can work with that you can be working with as part of the team you have to find the right person to develop a relationship so what does an ETS or HSD doctor do for you they do a variety of things it’s usually your your general practitioner they’re gonna be forming that partnership with you they’re going to accept information from you and share information with you as you both do research they’re going to be as respectful of you as you are of them and that’s very important a good primary care physician to become your best ally and should ideally be serving as the central point of contact for all of your other providers it’s sort of a hub-and-spoke so you and your GP or the hub in there and then as issues come up and you agree that they are a priority then you would be referred out to a specialist either as a consult or for specific care and those specialists can come from from a wide range of specialties so you’re kind of building a team here you’re building a medical care team so these are some of the specialties that you want to consider I wouldn’t rule out any of them at some point in your journey with EDS you’re going to have the need of all of these specialists just as somebody who doesn’t have yes as they age has the need of all of these specialists so building good relationships in there make sure though you are ready to do the work whether you’re going to visit your GP or whether you’re going to be seeing one of these specialists you need to go in prepared for an appointment and here’s some tips on how to prepare for an appointment prepare appropriately for different appointments sometimes you have an introductory or interview appointment and that’s going to be a different sort of preparation than if you’re going in as an established patient or follow-up visit etc keep a diary of the good and the bad things going on with your body and be very clear about recording the good stuff as well as the bad because that’s going to help you identify what helps what makes things worse what you enjoy what you’re willing to do and it will guide your decision-making going forward a good patient is honest with their provider so you don’t want to hide anything in that diary that you’re you’re keeping if you are having GI issues it’s okay to write it in there and to talk to your doctor about it keep an updated list of your prescriptions keep an updated list of your over-the-counter medications and supplements all of your vitamins etc and combine all of that with your diagnosis and whatever treatments you have going on into a one-page medical history summary it can be two sides but a single sheet and there’s a lot of important reasons why you want to create that sheet there’s a lot of different ways to create that that sheet there’s templates that are out there the pain community penguin org has an in case of emergency form the it’s a PDF that you just fill in to do that so that’s one option before your appointment make sure that that document is updated in case you’ve changed your supplements for example or you stopped taking a particular medication or whatever make a list of your top three to five issues and prepare two copies or three copies if you’re bringing somebody who’s going to be taking notes for you don’t expect all five of those issues on that list to be addressed in your ten to fifteen minute appointment you want to rank them in priority and hopefully by going in handing one copy to the doctor one copy to your person who’s taking notes and yourself everybody’s there and knows these are the things we’re focusing on let’s not get distracted by whatever else might be happening in the room or whatever agenda somebody’s bring somebody else is bringing to the manage your expectations in that way that you know you’re you’re not going to get everything done in one one visit make your follow-up appointment before you leave as necessary make sure you get copies of your instructions for what to do or what the next steps are

you can take a crash course in anatomy on YouTube I think it’s youtube.com slash crash course to communicate better about anatomy or we can pick up a copy of grey’s anatomy that would be the book first published in 1858 not the TV show it does come in coloring book versions which are really great for teaching children how to talk about their body and what the names of different body types are learn the names of the things that are giving you problems so you can start to visualize what’s going on inside of your body it helps you to develop the communication skills develop the right vocabulary to talk about those things it expands your vocabulary as you think about different adjectives that might apply you can describe it in colors in vibrations and in all kinds of sensations and that will mean that the answer that you give when you’re asked where does it hurt will be very specific keep in mind that the stuff bothering you today is going to get sorted out and there’s going to be something else that’s bothering you next week next month or next year so whenever something new happens I tell people take a couple of deep breaths three cleansing deep breaths and then think about it for a moment in terms of Gray’s Anatomy or or the YouTube video etc think about how you would describe it think about the different senses that are involved is there a color is there temperature change is there is it sharp does it stinging that throbbing how would you describe it before you move forward also think about referring back to your symptom diary that you should be keeping think in terms of has this ever happened before and what did I do to help fix it was it heat was an ice was it elevating it was it distracting myself with the activity was it just taking a glass of water you know sitting outside coupling the cat whatever it might be you have a lot of options and then that’s going to increase your flexibility it’ll make you more adaptable as you continue to build your tools acknowledge your tools you you are your own experience that’s excuse me you are your own experiment enjoy the challenge document everything along the way and continue to do research when searching for new articles and information include keywords relating to symptoms like chronic pain GI pain chronic illness consider leaving es or HSD off the list of search terms and you will find a larger pool of information again keep on with experimenting food and water they are basic building blocks for life for a living many people with with all of the types of EDS have GI issues so you want to keep experimenting with what feels right for some people with EDS they can feel the food as it makes its way through their body so for them they might prefer a softer diet so that there’s less awareness of where stuff is less discomfort you want to try and stick with the less processed food options less processing means that there’s a higher nutritional value and lower additives that are potential irritants which may trigger an a cell response or some other allergic response or some other symptom going on in there so fewer additives no artificial sweeteners they should definitely be avoided I encourage all of you to seek out the presentation by dr. Heidi Collins regarding GI issues on ETS at this year’s conference which was just last month in her presentation she refers to 80s patients as the canary in the coal mine in which she’s finding in her practice as a physician in rehab medicine and as a person who lives with dala syndrome and a parent of children with the yes she is seeing more and more situations where a food or a food additive or processed food causes physical problems or physical symptoms with EDS patients first and then the research bears out similar problems in a larger population sample yeah as we all see on the news so you are also

encouraged to limit carbonated caffeinated and alcoholic drinks I know it sounds like I’m telling you to have no fun that’s not the case trust me you can still have chocolate in limited quantities definitely so dynamic balance is an important principle to embrace life is a dance dancers and athletes often describe their movements their ability movement is dynamic balance if there’s two people that are dancing together each one would fall if you just popped one person out of there because they’re both pulling pushing moving and testing limits constantly those are all things that you need to do on your own so the two dancing partners that you’re controlling for your mind and your body you get to know them individually and you get to know them together activities like mindfulness modified supervised yoga or pilates guided imagery exercises Feldenkrais will help you develop a mind-body connection getting into the habit of doing a regular body scan which is a very simple exercise when you go to bed lie down in bed you get yourself aligned and then you take your your mind on a tour of your body and pay attention to how things feel is it aligned comfortably is there any pain is anything warm or cold etc so that you can make small adjustments that’s a body scan exercise that a counselor or even a general practitioner can help guide you through or a physical therapist etc so ask for that ask for that support managing your posture becomes very important at the conference a couple weeks ago dr. Deepak Chopra reinforced this many many times in his presentation you want to hold your head back because of you you’re holding it forward or leaning over etc it causes too much weight to be pulling it down and it disrupts your shoulders your neck your back your torso etc so learning working with the physical therapist learning what the proper posture is where your neck should be where your head should be well take stress off of these upper parts of your body it’ll also help with headaches in there change positions often lying down sitting standing keep rotating in there don’t sit at a desk for all you know 12 hours of the day or sit in a recliner or on the sofa just watching TV and not moving the more you move the better off you’ll be the idea is you want to keep moving forward and your mind-body connection is going to help you tell the difference between normal weirdness and Moyne medical attention is necessary to resolve pain discomfort or life-threatening issues exercise so pain fatigue and fear are common barriers to exercise advice from physiotherapist or physical therapists and beliefs about the benefits of exercise influence the reported exercise behaviors of ehlers-danlos syndrome hypermobility type patients according to a research article that was published last November 2017 so living with IDI anise and HSD of all types means that you’re training for a marathon of life and it also means relearning how to move your body the way you’ve been moving up to the point where you going to diagnose this is just coping and avoiding pain or avoiding triggers or trying to just slog through so now it’s time to relearn what you’re doing with the equipment first thing you do is you redefine exercise you get credit for getting out of bed that is exercise you debt credit for walking from one end of the house to the other you get credit for sitting and aligning your body properly etc all of those things count as exercise all of those things contribute to better performance as you run your version of a marathon of life you need to acknowledge that low resistance low weight small increments of change etc over a long period of time are the way to go you’re not gonna give any quick fix or any fast results you really need to work on this

this is again more work for you you have consultants on your team or members on your health care team that can help you with this occupational therapists massage therapist physical therapist etc the mind-body connection helps you learn where things are in space the professionals are gonna teach you where the cues are so you know if I touch myself here that I know that if I can see it I need to move my head a little bit forward if I can’t see it I might need to move it a little bit back so that I can see part of my hand learning where those cues are where’s the right place to put my my head embrace movement and ask those professionals those consultants to customize a routine or a program for you you need to understand the risks of deconditioning because with ehlers-danlos syndrome the connective tissue is what preside provides the elasticity so when you grow your bones grow first your muscles grow last tendons and ligaments are meant to act like rubber bands to make up the difference in between unfortunately when a connective tissue disorder is in play the elasticity of those tendons and ligaments is compromised I mean some of the types of EDS it’s extremely compromised so bracing more other supports are needed to stabilize the joint and make it possible for the muscle to gain any muscle tone and improve stability in other types it’s simply a matter of a little bit of muscle tone will make all the difference in strength and stability etc you have to learn to listen to your body and figure out do you need more or less activity to keep moving safely through your day you need to learn what the normal range of motion is for you and what it is for other people often times I’ll do yoga with somebody who does not have you yes it is not hyper mobile so that I can see what their endpoint is when they stretch and they’re trying to their goal is to reach as far as they can my goal is to mirror what they’re doing and not move beyond what they have done so that’s one way to learn a normal range of motion in there avoid straining which means holding your breath while you’re lifting something or pushing something too hard or over exerting yourself or straining while in the bathroom etc all of those things are damaging to muscles they could cause hernias they could cost vessel ruptures bruising etc internal issues or it could do nothing it’s just better safer to early on get in the habit of avoiding straining and understanding that there’s always this possibility admittedly a low risk for most of us there is a possibility of issues happening and it’s important to note that that’s a common issue for people as they age you want to protect your joints so avoid doing circus tricks if you feel the need to document your high mobility take photos and/or a video and keep that then stop the performance use orthotics braces supports etceteras figure out which clothing is most comfortable which joints need more support which braces are most comfortable any of the people with EDS that you meet from all of the different types as you need them over time you’ll find that most of them travel with a collection of braces supports compression garments etc just in case so it’s like a rotating thing I have met someone who had her braces in everything hanging up in a spare room closet they were organized some of them were in drawers and things so that she knew okay I have an ankle issue how bad is my ankle issue do I need a boot or will an Ace bandage little thing little sock thing cover it or will compression stockings do it to get me through my day etc shoes shoes shoes shoes shoes they’re the basis for support most people with with ETS NHS do you have floppy feet that need extra support a lot of them have high arches that then collapse when they’re weight-bearing so that causes pain every time they’re up

and down and what that means is no flip-flops you want shoes with an arch support in there to minimize the collapsing and the increased pressure on all of those little joints that are in your feet there personally I feel best when I if I’m able to change my shoes at least four times during the day to vary my foot cheap as the day goes on I find different pressure points as my feet sort of settle in around but whichever a pair of shoes I’ve gone on so for me I’ve I through experimentation learned that changing my shoes often sort of redistributes the weight redistributes the pressure points and it also changes my posture remember your feet or your foundation and that’s what allows you to align your ankles allows you to align your knees allows you to align your hips shoulders etc so think about your shoes and your shoe habits and what you’re wearing when omoide flip-flops get professional help and keep going back to update what the options are with new technology new design etc there’s new braces that are always coming out that might be helpful for you might be more comfortable for you might even be more attractive for you give you more options and epsom salts there is no big commercial company that is promoting epsom salts out there or epson salt research it is one of the things that you’ll hear about in the online support forums etc that a lot of people get relief from just soaking sore joints in there in the absence all it’s like one cup in a tub of water just your feet twenty minutes can provide a lot of pain relief for sore joints or feet etc sleep is medicine well we hear it all the time sleep is going to help you control your weight it’s gonna help you manage your pain there was a study that was just talked about on the news yesterday about how college students who his sleep was limited or interfered with they either dropped a class or did more poorly in the classes that they kept so school performance work performance lowering stress protecting the heart preventing heart attacks it’s a fountain of youth it’s gonna make you look beautiful forever or sleep is medicine and it’s pretty much widely accepted that this is this is the case so sleep hygiene is what you need to be looking at you need to again experiment with yourself figure out what is gonna work for you first of all create a dedicated sleeping space there’s no screens in there it’s a comfortable place you’ve got pillows blankets gel supports heating pads whatever you’re gonna need to make it comfortable next you want to set a sleep schedule and you want to stick to it no matter what always go to bed at the same time always get up at the same time let’s establish a routine so there’s a certain set of activities that you’re gonna do before you go to bed you’re gonna brush your teeth you’re going to change your cheer pajamas and then you might have some little ritual where you read a book or you play a game or you have a cup of tea or you have that last cookie of the day whatever it is establish that routine so that your mind knows once I start this cascade of behaviors I’m heading to to sleep we’ve all heard that getting that rule of getting 78 hours of sleep per night is required for the maximum benefits what they don’t really go into a lot of detail of is that you don’t have to have that seven or eight hours all in one block and it doesn’t mean that every time you wake up you have to reset the clock so you can go to bed 10:00 and wake up at 7:00 or 8:00 and get seven or eight hours of sleep in between with several wakings which is most often the case with people with pts so don’t stress when you wake up in the middle of the night it’s completely normal even people without EDS or HST or some other chronic illness will wake up multiple times in the night set yourself up for success make sure you exercise get light early in the day light stimulates your hormones and helps your body regulate all of the chemicals that make it possible for you to sleep so you want light at the right time and no light at other times so dimmer lights at night etcetera exercising regularly improves your blood flow etc again helps you regulate all of that that stuff necessary for a good good night’s sleep skip the nightcap cocktail because

alcohol prevents reaching the restoratives level of sleep a lot of people mistakenly think Oh alcohol if I have a glass of wine just before bed it’ll help me go to sleep actually it won’t because alcohol prevents you from getting to that restful level of sleep in there so it becomes very disruptive the quality of your sleep will be much less avoid or quit smoking nicotine and cigarette smoke is a stimulant and if you have a connective tissue disorder smoke the act of smoking anything or being around smoke affects your lungs your lungs are connective tissue after all so be aware and conscious of that if you currently smoke find a way to quit if you’re around people who smoke find ways to avoid it learn techniques for getting back to sleep what are you going to do when you find yourself waking up so now we’re gonna move on to build and activate your your care team and talked a little bit about before the health care providers also think about who else is in your care team you’re looking for people who are going to lift you up not put you down that includes your caregivers you’re supporting their network services it could be the delivery grocery delivery service or the UPS guy that brings your Amazon orders your pets you are part of your care team friends family find ways to keep in touch in person interact with people on the phone text email and even I have a lot of friends in the eds community and one of the things that I love most is the random text that I get from some of those friends it really brightens my day and I do the same for them patient portal messages to your providers now with electronic electronic medical records we’re able to send emails to our doctors we don’t always have to write them a letter or send them a phone call we can keep them updated what’s going on give them an update of oh you had me try this this is how it working out I know I’ve got three more weeks this was really interesting to me so I wanted to share that with you check in with yourself daily and make your emotional climate a priority you want to continue to maintain and develop healthy worthwhile relationships with other people and with yourself so what you’re trying to do is avoid isolation sure you need to take care of yourself you need to be with yourself and do all that mind-body stuff you also want to avoid isolation because isolation sort of amplifies all the negative stuff going on and that can lead to a more restricted life which will conflict with creating a positive value image of yourself ways to cope mental healthcare is something that is just as important is your physical health so when somebody gives you that referral for the mental health care department look at it instead of as a punishment look at it as an option to get access to something else that you haven’t tried not just counseling in support groups turn medication tell them yeah I want that because I want to learn guided imagery I want that because I want to learn biofeedback etc I want that because I want to learn about art therapy or a journaling or meditation etc you want to take control of the situation focusing on control is very important you get to control what you eat you get to control when you take your meds and you get control get to control who you spend time with and how much time you spend time how much time you spend with them hopefully that they are they are supportive individuals hopefully you’ll find some new passions along the way some new activities or things you can enjoy be open to trying new things be adaptable again redefine what a productive member of society looks like into something that you are comfortable with you’re capable of so much here and as I said earlier people with EDS nhst that I’ve met are some of the most and most attractive people in the world you want to be with them because they think differently you enjoy being with them you enjoy looking at their faces you enjoy communicating with them so reach out to other people with with chronic illnesses etc think about what your role is and what you bring to the relationship you you can invite people to help you in creative ways for example that symptom Journal we talked about earlier maybe is easier if a friend or a partner or a family member

interviews you once a day and they record the data a notebook or spreadsheet or whatever that friend is a math whiz or an engineer they may enjoy creating a personalised spreadsheet for you from which you can generate all kinds of graphs or they might you know that might be something they do for fun you both win because you maintain an intimate relationship in there you’re giving them something tangible that they can do to support you and that’s a very important in keeping people in your life so we’re nearing the end here I promise keep in mind that the emergency department the IDI their team has a specific job and that is just to stabilize you and move you on to your regular doctor or to the inpatient hospital team make sure that before you go to the emergency room you are managing your expectations you do not expect them to fix or solve something all at once they’re not going to diagnose something they aren’t going to cure whatever it is it’s very unlikely know when to go don’t use the emergency department as your primary healthcare portal it’s some place to go when you’re experiencing something life-threatening like a heart attack or stroke you need to have broken bones set or dislocation reduced in the eds population and HSD populations there are joint dislocations joint subluxations you need to learn the difference between them and when to ask for help you need to if something’s bleeding and it needs to be stitched up you have to be prepared to go in and get the stitches so along the way part of your journey is figuring out wound healing wound closing techniques that are going to work with you and your fragile eds skin stitches don’t work on everybody’s april’s don’t work on everybody them doesn’t work on everybody everyone’s got their own combination of multiple things that will work so again it’s your own experiment have your medical summary with you so that you’re prepared and there your safety preparedness advice is to get a go-bag ready ahead of time and identify three people who could accompany you to take notes and advocate for you if necessary make sure they know where your medical summary is you’ve got your one-page medical summary or insurance card your overnight needs and any comfort items braces pillows blankets whatever it is that you’re gonna need for a couple of hours or overnight seek legal legal advice on medical directives and decision making options that are relevant to where you live state country etc consider a medical alert option keep in mind that first responders are trained to look first on the wrist second on the neck for a necklace if they’re coming to your house the next place they’ll look is your refrigerator so keep an envelope on your refrigerator with a magnet that has your one page medical summary there just in case that’s that would be happening if you’re not at home the next place they’re gonna look is your wallet or your handbag or whatever again one-page medical summary right there obvious easy for them to find after they look in those places they will then look at your phone there are a lot of apps and a lot of options to keep information there so explore that get copies of your medical records and stay up to date in there most importantly live life even with the diagnosis of chronic health condition you are allowed to live a life worth living you get to have fun and laugh you get to choose what you want to do when you want to do it you get to choose what you want to try just because they say you shouldn’t do this you can’t do that because of this diagnosis only you can set limits on yourself if there’s one something you want to try you’re creative enough you are strong enough please find a way to do it or experience it parents your job doesn’t change just because your child has received this diagnosis your job is still to teach your child how to make choices to understand that decisions have consequences parents are meant to coach and coach their children out into the world so I have a large group of people to thank or asking me questions making me think and learning with me to prepare this presentation for you there’s some resources and we’ll make sure these are available to you on the with links provided on the website later and I can take questions now Thank You Maggie when

a first question you mentioned a fillable PDF for one-page medical history what is the website for that that would be pain community org okay thank you why is there such hesitancy even with knowledgeable doctors to not diagnose a child who presents with a list of symptoms is there a set cutoff age that’s now being used to diagnose a child there is not a set cutoff age for a child to be diagnosed children physically even if they don’t have EDS we’ll be hyper mobile and we’ll have very soft skin up to a certain age and that age could vary from you know 5 to 15 so that would be why a doctor would be hesitant to provide that diagnosis etc if there’s a specific symptom or a specific injury that needs to be addressed then they would be managing that symptom or that injury just as they would with somebody with the diagnosis the primary course of treatment is currently to manage each engine injury and manage each symptom as appears I think I have ETS hypermobility I don’t yet have a diagnosis can I still have it if to my knowledge neither of my parents have it yes and there’s more information on Ahlers dennis ehlers-danlos comm with the diagnostics diagnostic criteria and diagnostic explanations of HST and EDS so your parents may not have a diagnosis for multiple reasons they may have symptoms that are so mild it’s never caused them problems they’ve adapted early on in life and by the time you get to know them they’ve had decades to find their way figure it out remember this is a smart group of people there’s also the possibility that there could be a genetic mutation a spontaneous mutation in there there’s lots of different reasons so there’s there is information out there on the website that explains the diagnostic criteria etc it’s unlikely because of the diagnostic checklist and it lists specific things such as a first-degree relative who has the diagnosis as one of the diagnostic criteria and that has to do with research and identifying the gene etc so you could just be labeled as high permeability spectrum disorder it doesn’t mean that your symptoms are any less important or any any specific treatment is needed or wouldn’t be provided to you my daughter has recently been diagnosed with hyper mobile EDS and has terrible back problems our back problems normal for EDS that problems are normal for everyone who goes through aging and back problems are normal for people who have deconditioned core muscles core support as well as normal life events if you have gone through childbearing you’re more likely to have back problems if you have been active as an athlete and all to teens or 20s and then suddenly stop you’re more likely to have back problems etc back problems in and of themselves are not a specific symptom of a lawyer on the syndrome what is the difference between a subluxation and a dislocation and can ribs come out of place some places say ribs can dislocate some places say they can’t so clear that up for us oh well first of all I’m not a doctor I have an undergraduate degree in social work and I have an MBA in accounting I do have 56 years experience of living in a body with hypermobile ehlers-danlos syndrome and I have experienced both dislocations and subluxation so from a patient perspective I can tell you I have learned that a dislocation is when the joint completely comes apart my shoulder for example this the upper part of the bone here came out and got stuck behind I can’t get it back in on my own the the joint is I’m unable to use it in a dislocation the full dislocation in a subluxation it slides out usually on this shoulder it slides down or forward a little bit and if I shrug and move it around or rub it etc I can get it back to someplace comfortable doesn’t mean the surrounding tissue is any less sore or uncomfortable it doesn’t mean that one is easier to recover from I don’t

think either one is easy to recover from so typically with the dislocation you would be going to the emergency room because you need somebody else to pull you apart and put you back together and then stabilize the joint while it heals and then refer you back out to orthopedics and physical therapy with a subluxation you may or may not go to the emergency room by the time you get there it’s probably slid back closer to where it belongs you can still use use your hands your arms the rib dislocations I’ve never experienced a rib dislocation I have experienced costochondritis which is where the limbs dret are stressed or stretched against the sternum so they don’t feel right interferes with breathing it is quite painful etc I’ve also experienced subluxation of ribs at the spine on the back similarly very uncomfortable very difficult to breathe I’m not a doctor I haven’t heard of a dislocation of a room that is similar to what I described at the shoulder which has happened with my knee my personal experience with ribs has just been the cost of Unitas and the subluxation they do sort of roll around you know and even sitting back like that I can feel them moving around I don’t know how do you deal with people who are unreceptive or dismissive of your symptoms especially if they kind of have a stake in your well-being at a certain point people don’t want to hear all the bad stuff they want to know how they can help you they’re looking for a win so you need to give them a win before you can get them on your team for example if I just talked to a friend only when something hurts and I’m complaining and I’m always saying no I’m not able to go out with you do that know that activity is gonna be too strenuous no I can’t go dancing cuz I’m gonna injure myself or I’m afraid or whatever they are eventually gonna either stop talking to you or get angry or force try and force you to do things so then you’re in this antagonistic relationship fighting against one another you want to find ways that you can work together talk to them about things not necessarily talk to them about what’s going on with you talk to them about specific activities I want to do this with you because I feel supported because it’s something we both enjoy etc a lot of times when when people feel like I’ve got this this new weird diagnosis I have to learn everything about it and I have to explain everything to everybody else you’re gonna overload people around you with information so starting with as little information as possible I have a genetic connective tissue disorder because it’s necrotic pain sometimes I’m not able to complete projects I appreciate your patience then they might ask what is that condition ehlers-danlos syndrome then they might ask for more information when they’re ready for more information typically they ask for more information the more information you push on them without them being ready to receive it the more likely you are to push them to feel like you are pushing them away what about when this person is like a boss or a teacher or someone and you need to be able to convince them in order to get something from them or be able to work with them again be very clear about what your needs are for comfort be very specific about what they could provide set them up for a win let let them experience success but I have never been successful in providing an employer with a complete medical history or a complete explanation and saying I have this thing therefore I need a specialized chair and I need a little stool for my feet and I have to take a break every 45 minutes to walk around for 15 minutes and on my lunch hour I’m gonna be on a yoga mat lying down doing my back exercises and my afternoon break I’m gonna be out in my van taking a nap for 30 minutes then the noon flare is gonna be like what what have I gotten myself into instead say you know I have this thing I found ways to take care of myself and when I need your help I will let you know what specifically you can do to support me or or help me out we have time for about one more question when you’re diagnosed with a genetic disorder

that usually means it runs in your family how do you talk to family members who you think might have EDS but seem a little unreceptive to that so if somebody is over 18 and they’ve made it that far in their life and they’re coping and living what they believe is a successful life I don’t think anybody needs to push them into seeking the diagnosis they aren’t it isn’t necessarily going to change their quality of life and it doesn’t affect how you are treated etc so letting them know that you have this condition and you have the information should they want more information later or should they experience health issues is one approach I have a very large extended family and the decision was made by the elders I guess you could say great aunts and great uncles in second cousins etc from a generation older than myself that although I have the diagnosis they recognize the symptoms in a lot of other people even in literally for decades I’m the only one out of a pool of about 50 people who have this condition with the definitive diagnosis and when something happens or someone goes to the emergency room or there’s a pregnancy different family members will review the current classification the clearance symptoms etc and if something comes up they might ask me for more help or they will share that information with their doctors as they they feel needed feel is necessary the more you push the information on to a family member the more likely they are to push back until you it doesn’t affect them the way that it affects you and that is entirely possible even though it’s a genetic condition a parent and a child or two siblings can exhibit completely different symptoms completely different severity levels and that’s okay we don’t need to diagnose everybody there’s no benefit there’s no benefit for them or no perceived benefit for them they’re not going to be willing and it’s just gonna create friction an unwillingness to support you an unwillingness to help you and an unwillingness for them to ask for your help when they need Thank You Maggie that is all the time we have here today thank you so much for being here our next webinar will be on Wednesday August 25th with dr. Patrick Agnew he will be presenting on EDS and podiatry you can look for that sign up within the next few days thank you so much Maggie for all of your help today and thanks for all of you for attending and you all have a wonderful day thank you